Newly Diagnosed With ALS? Now What?

You have ALS says the Doctor! What happens after that bombshell has been delivered and has time to sink in…how can my human engineering be perfect one day then the next it slowly starts to unravel my life. More importantly, how do I manage with it or prevent it from getting any worse. This is the beginning of the fraught journey that many an ALS patient and their families have to come to terms with and go through on a daily basis.


One day everything is fine with the world, your healthy, happy, doing well in your business and social life, you have a happy and loving family or partner, then things start to go south, and very quickly. 365 people per day are diagnosed with the disease globally!

ALS starts with strange sensations usually in the arms or legs which don’t respond like they ought, there is no pain; numbness is often how people describe the onset, so you start to see the experts for advice, forensically ruling things in or out of the equation. Then suddenly one day, part of the body gives out whether an arm a hand or leg, it’s irrelevant it just doesn’t do what you tell it to, it’s as if part of your body is on strike! Dam it I’m not going to move and there’s nothing you can do about it… you can think as hard as you like, but I’m just not going to work.

Finally you decide to see the doctor, then the tests start and so the disconnecting journey that is ALS begins, with those immortal words I’m sorry to have to tell you this but… you have ALS! Ouch where did that come from!

So how do I deal with that? Virginie Bijon on the ALS Canada site so eloquently recalled her journey before she succumbed to the disease in 2009 by describing how after once they had told her she had ALS she immediately went home Googled ALS and realised that she may only have 2-5 years of life left from time of diagnosis!

She went on to describe how many see this as their death sentence. In her case as in many others, with time and the support of family and friends, comes the determination to try and beat the disease by finding that magic bullet that will stop the neurons from disconnecting. Very many try to get on with life and continue to work for as long as their body allows it. You change your routines you eat healthier and scour the net and other mediums for a clue that will provide you with that ray of hope to beat the disease!

In this instance Pete has after consultation decided that the Stem Cell research out of the UHN in Toronto, is the one that he wants to support, it might be different to what others wants to pursue but it matters to Pete and all the monies raised will go to this research and this research alone, as our friends at the Adaptive Canuck ALS Foundation say “no institution or foundation will take a cut or % of the donation to operate… it’s all going to Stem Cell Research”.

Please DONATE and remember to think differently like we do about beating ALS, why, because people like you and Pete change things as Rob Siltanen wrote:

they push things forward into unchartered territories, because people like you who think they can change things are the ones who probably do”

Lets change the outcome for people with ALS.

Leave a Reply